new here, having RT this month at Scripps | Ledderhose | Forum for Dupuytren's contracture

| Lost password
366 users onlineYou are not loggend in.  Login
new here, having RT this month at Scripps
 1 2
 1 2
02.07.13 08:42
spica 
02.07.13 08:42
spica 
new here, having RT this month at Scripps

Hello, I am new here. First of all I want to thank you all for your posts. I have learned everything important about LD here. The standard medical websites are completely useless for this disease.

I discovered a small lump in each foot about a year ago. After a quick google search it was obvious this was LD, though I am a 50ish woman, otherwise quite healthy and active, with no known family history of DD or LD. My podiatrist said best to watch and wait, maybe would never become a problem, and talked about Verapamil and cortisone injections, with surgery as an absolute last resort. At first it was not painful at all and I actually forgot about it. A few months ago I started having a lot of foot pain and thought it might have been from the rocky trail I’d hiked, or the long flights I’d been on recently, or too many hours in “nice” shoes, but then remembered the LD. I discovered I had more lumps and what felt like cords. I started researching like crazy and followed up on every lead I came across, in this forum in particular. It seemed clear that “watch and wait” is exactly what one should NOT do when nodules are small and the LD is active. RT seemed to make the most sense to me.

I called Dr. Tripuraneni’s office at Scripps (from the list on this site). So great to talk to people – the nurse, the scheduler - who knew exactly what I was talking about! I scheduled a consultation. When I told my podiatrist about it, he actually became angry and seemed to insist the pain was from plantar fasciitis (which I’ve never had to my knowledge). I was so shocked, my whole family has known him for many years and he has always been great. He couldn’t believe radiation therapy was a legitimate treatment, though he acknowledged Scripps’ excellent reputation.

I went last week for the consultation. Scripps is in La Jolla, a two-hour-plus drive from where I live. The facility is very nice – super organized and friendly. Again, very reassuring that everyone was familiar with LD. I was told they see 30-40 patients a year for DD/LD the past several years. Dr. T., who has a very nice manner, examined me, found the nodules and cords and outlined them in ink, took photos, discussed my symptoms at length. He said I was a good candidate for RT, in an active stage and with small nodules. He said about ¼ to 1/3 of the patients he sees for this he will not do radiation on because they don’t meet the criteria. He examined my hands and said no sign of DD, fortunately. He talked a bit about Prof. S., with whom he has authored textbooks and has a good professional relationship. In a way I had really wanted to go to Germany to be seen by the world expert on this disease, but Scripps is less disruptive to my family and I have confidence in Dr. T. I will go July 22 for the “planning session” and CT in the morning, then the first treatment later in the day. I’ll go each day for five days, M-F that week (3 Gy each day). After four weeks I’ll go back for evaluation and to schedule the second round.
My health insurance is Anthem Blue Cross PPO, and they said the treatment would be covered without need for pre-authorization. Now I just have to hope it’s effective for me. I plan to be active and walking, hiking, etc., for many more years. This disease seems to be so unpredictable though.

I wanted to mention I have found swimming feels great on my feet. I still walk a couple of miles every day (in trainers with orthotics), but my feet are sore afterwards. The swimming is fantastic though. It almost “scratches” the “itch” I feel in my feet, that feeling of active stage LD that some people have described here. If I swim in the evening my feet feel better all night.

I will post an update after my first round of treatment. Again, my thanks to you all for taking the time to post your experiences.

02.07.13 21:07
LubaM. 
02.07.13 21:07
LubaM. 
Re: new here, having RT this month at Scripps

Spica,
Welcome to the forum and good luck with your LD treatment at Scripps. Just wanted you to know that you are in good hands with Dr. T. at Scripps. I had RT for my left hand DD and left foot LD with Dr. T at Scripps in November 2009. For my hand it was partially successful in that it stopped the progression of the disease for three years in the palm of the hand, but eventually I started to have a problem with my pinkie contracting and needing NA treatment, which I did recently.

My RT for the left foot was totally successful at stopping the progression of the LD. I had two hard, marble size nodules on the bottom of the left foot, it was constant itching and burning and the nodules were getting larger. In Nov 09 I had RT with Dr. T, same dosage as you are getting, but he did two consecutive weeks, Mon to Fri. In 2009 Dr. T was just beginning to treat patients for DD and LD, he surely has much more experience in that field, and seems to follow German protocol of waiting between first and second series of treatment.

We also live 2 hrs. away and we opted to stay in a great, inexpensive hotel near Scripps because we didn't want to deal with traffic, let me know if you need that information. It has been over three and a half years, and the nodules on my foot are more than 90% gone. What remains I can barely feel. I still only wear comfortable shoes most of the time (sneakers in winter and very good ECCO sandals with lots of arch support in summer) and only wear "dressy nice" shoes for special occasions. I have "bad" feet with bunions and plantar fasciitis (in remission), so I don't want to take any chances.

It's great that your insurance is covering this. There was an "issue" at Scripps with Medicare covering RT, so that's a problem for us "seniors".

Let me know if you need more information
Luba

06.07.13 09:21
spica 
06.07.13 09:21
spica 
Re: new here, having RT this month at Scripps

Hi Luba,

Thanks so much for the reply. I remember reading about your experience at one point but I couldn't find the thread. I'm glad the RT with Dr. T. was so effective for you, I hope to have as good an outcome. I think I'll stay in La Jolla for 2-3 nights and drive back and forth the other days. If it's not too much trouble I would appreciate the name of the hotel where you stayed. My daughter will go with me for this round, and a couple of friends have volunteered to go with me next round, when my daughter will be away at college. I'm sure everyone would be supportive no matter what, but La Jolla being so beautiful definitely makes it more appealing! I live in the LA area - maybe you do too - and I find it so surprising that with UCLA, USC and Cedars-Sinai nearby, no doctors here are treating LD with RT. Or at least not that I could find any information about.

I am grateful that my insurance covers this when I hear that Medicare doesn't. Hard to understand the reasoning behind that.

Thanks again,
Spica

06.07.13 09:52
LubaM. 
06.07.13 09:52
LubaM. 
Re: new here, having RT this month at Scripps

Hi Spica,
Here is the website of the hotel in Del Mar.
http://www.delmarinn.com/ it is now listed as the Clarion Del Mar Inn, it was a different name when we went three years ago, but I recognize it from the pictures as being the same hotel. At that time we got an extra discount for being a patient at Scripps, there was a kitchen in the room, and they had a shuttle from the hotel for appointments, but I used the car, it was a ten minute drive with beautiful scenery along the coast. We stayed the whole two weeks.

Good luck with your treatments and keep us posted.
Luba

01.08.13 18:39
CA1 
01.08.13 18:39
CA1 
Re: new here, having RT this month at Scripps

spica:
I will go July 22 for the “planning session” and CT in the morning, then the first treatment later in the day. I’ll go each day for five days, M-F that week (3 Gy each day).

How did it go?

06.08.13 05:55
spica 
06.08.13 05:55
spica 
Re: new here, having RT this month at Scripps

Hi,

Luba - Thanks so much for the hotel information. It looks great. If I stay overnight next round I will stay there. Last week I drove both ways each day.

I went for the five treatments and unfortunately I don't see any change in size of the nodules or cords yet. I hope they may still shrink, especially after the second round of RT next month.

By the end of the week my feet were pretty sore. On day 1 at the "planning session" they poked at everything to mark the locations and that hurt. Then I think the treatments themselves caused some cumulative tenderness - the technician indicated she'd heard this from others. And I drove two hours each way for five days, which I'm sure didn't help. I normally don't drive much at all. On day 2 we walked around the La Jolla beaches for a few of hours after the treatment, which seemed fine at the time but may have contributed to the soreness by week's end. I think the pain I felt by the end of the week was the worst I've ever experienced with LD. After a few days of taking it easy I'm back to normal, or close.

I was surprised that the area they treated was a big circle that covered pretty from one side of the sole of my foot to the other, much broader than just the actual cords and nodules. I guess that is "the margins" I've read about, but I do wonder about the good cells that get the radiation. I will ask the doctor when I go back.

I'll post after the next round, hopefully with good results!

Spica

06.08.13 17:10
LubaM. 
06.08.13 17:10
LubaM. 
Re: new here, having RT this month at Scripps

I think your driving and activity contributed to the soreness you experienced. You might want to take it easy for the next round of treatments. I don't recall having any problems after radiation, but everyone is different. As far as seeing changes in size of the nodules it takes time, my nodules continued to shrink months after the radiation and four years later they are 90% gone. Keep us posted.

Edited 08/06/13 17:12

12.08.13 19:16
cschieber 
12.08.13 19:16
cschieber 
Re: new here, having RT this month at Scripps

Hi Spica. Try not to get discouraged. I had RT on my hands in April and they were worse afterward but not for long. It took about two months for me to notice that the nodules I have were smaller and no longer painful. Prof S told me I have LD as well but was not ready for RT. Hopefully I never will be but you never know. I do get cramping in my arches while sleeping that is relieved by hyperextending my toes. I've had this for a few years and had no idea what caused it but now I assume it's the LD. I hope you see positive results soon.

08.09.13 21:42
Tamarakruse 
08.09.13 21:42
Tamarakruse 
Re: new here, having RT this month at Scripps

Thank you for this info. I am brand new to this, having seen two foot doctors that have told me nothing, and that radiation was not done for non-cancerous issues. I am not trying a radiologist in Seattle tomorrow and am planning to take him the info on Ledderhose. A radiologist in Fairbanks AK recommended this guy, so at least I feel hopeful that someone will listen to me. I am 52 and have had this since Janiary, when walking in burs on the beach brought this on
I am so happy to hear about Scripps, as I too, am hopeful but nervous about traveling to Germany. Please provide updates, I would really appreciate it. Thank you.

27.09.13 08:22
spica 
27.09.13 08:22
spica 
Re: new here, having RT this month at Scripps

Hi,

Sorry I haven't been on in such a long time. Thank you for the supportive messages! I just got a private message with an email notification which prompted me to log on again, and I responded to Tamara with some specifics about RT at Scripps.

I have all good new to report! A couple of weeks after my last post, I noticed one day that I had been walking around the house and yard barefoot for at least an hour with no pain at all. Before the RT I couldn't take even a few steps barefoot. I checked and sure enough the nodules were a little smaller and definitely softer and sort of flatter. So encouraging! I went last week for my second round and Dr. T. at Scripps was also really pleased. The second week's treatment was uneventful, I had no discomfort like I had the first round. I'll go back in two months for a follow-up visit. Dr. T. expects that I will continue to improve, as some of you have experienced too.

Overall I have so little pain now it's pretty amazing. None of the night time throbbing. I am enjoying wearing sandals all day, even heels sometimes, which sounds like a little thing but feels like a privilege after always being so worried about my feet.

I have the highest regard for the entire team at Scripps and am really grateful to have found this forum and, through it, Dr. T.

My thanks to all who have posted here!

Spica

 1 2
 1 2
treatments   definitely   pre-authorization   unpredictable   unfortunately   progression   treatment   Tripuraneni’s   successful   hyperextending   radiation   information   understanding   experienced   Scripps   two-hour-plus   non-cancerous   consultation   “scratches”   nodules